Leveraging Joint Planning in Early Intervention: Documenting with Intentionality and Specificity

A family-capacity building approach to coaching, where providers support caregivers to embed identified strategies into daily routines and activities, is commonly embraced in Part C Early Intervention (EI). EI providers use several coaching strategies within this approach, yet few studies have reported process features, and coaching strategies are not well defined in the literature. We partnered in this Participatory Action Research (PAR) with current EI providers engaged in a year-long self-study process to provide an empirical account of one coaching strategy, joint planning, and related documentation. Our results indicate both providers and caregivers view documentation of joint planning as beneficial, highlight supports and challenges, and suggest that joint planning documentation holds significant promise for improving practice, data-based decision making, and progress monitoring of child and family outcomes including changes in caregiver capacity.

The Impact of a Pediatric Continuity Care Intensivist Program on Patient and Parent Outcomes: An Unblinded Randomized Controlled Trial

Objectives We studied the impact of a standardized continuity care intensivists (CCIs) program on patient and family outcomes for long-stay patients in the pediatric intensive care unit (PICU), also assessing the intervention's acceptability and feasibility. Methods A patient-level, unblinded randomized-controlled trial in a PICU at a large children's hospital. Participants included: (1) patients with ≥ 7 days PICU admission and likely to stay another 7 days; (2) their parents; (3) PICU attendings participating as continuity attendings; and (4) PICU attendings providing usual care (UC). We examined a bundled intervention: (1) standardized continuity attending role, (2) communication training course for CCI, and (3) standardized timing of contact between CCI and patient/family. Results Primary outcome was patient PICU length of stay. Secondary outcomes included patient, parental, and clinician outcomes. We enrolled 115 parent-patient dyads (231 subjects), 58 patients were randomized into treatment arm and 56 into the UC arm. Thirteen attendings volunteered to serve as CCI, 10 as UC. No association was found between the intervention and patient PICU length of stay (p = 0.5), other clinical factors, or parental outcomes. The intervention met a threshold for feasibility of enrollment, retention, and implementation while the majority of providers agreed the intervention was acceptable with more efficient decision making. Thirty percent CCIs felt the role took too much time, and 20% felt time was not worth the benefits. Conclusion CCI intervention did not impact patient or family outcomes. PICU attendings believed that the implementation of the CCI program was feasible and acceptable with potential benefits for efficiency of decision making.

Association Among End-Of-Life Discussions, Cancer Patients’ Quality of Life at End of Life, and Bereaved Families’ Mental Health

End-of-life discussions are essential for patients with advanced cancer, but there is little evidence about whether these discussions affect general ward patients and family outcomes. We investigated the status of end-of-life discussions and associated factors and their effects on patients’ quality of death and their families’ mental health. Participants in this retrospective cross-sectional observational study were 119 bereaved family members. Data were collected through a survey that included questions on the timing of end-of-life discussions, quality of palliative care, quality of patient death, and depression and grief felt by the families. Approximately 64% of the bereaved family members participated in end-of-life discussions between the patient and the attending physician, and 55% of these discussions took place within a month before death. End-of-life discussions were associated with the patients’ prognostic perception as “incurable, though there is hope for a cure” and “patients’ experience with end-of-life discussions with family before cancer.” There was a small decrease in depression and grief for families of patients who had end-of-life discussions. Those who did not have end-of-life discussions reported lower quality of end-of-life care.

Family Outcomes After the Pediatric Intensive Care Unit: A Scoping Review

Background Intensivists are increasingly attuned to the postdischarge outcomes experienced by families because patient recovery and family outcomes are interdependent after childhood critical illness. In this scoping review of international contemporary literature, we describe the evidence of family effects and functioning postpediatric intensive care unit (PICU) as well as outcome measures used to identify strengths and weaknesses in the literature. Methods We reviewed all articles published between 1970 and 2017 in PubMed, Embase, PsycINFO, Cumulative Index of Nursing and Allied Health Literature (CINAHL), or the Cochrane Controlled Trials Registry. Our search used a combination of terms for the concept of “critical care/illness” combined with additional terms for the prespecified domains of social, cognitive, emotional, physical, health-related quality of life (HRQL), and family functioning. Results We identified 71 articles reporting on the postPICU experience of more than 2400 parents and 3600 families of PICU survivors in 8 countries. These articles used 101 different metrics to assess the various aspects of family outcomes; 34 articles also included open-ended interviews. Overall, most families experienced significant disruption in at least five out of six of our family outcomes subdomains, with themes of decline in mental health, physical health, family cohesion, and family finances identified. Almost all articles represented relatively small, single-center, or disease-specific observational studies. There was a disproportionate representation of families of higher socioeconomic status (SES) and Caucasian race, and there was much more data about mothers compared to fathers. There was also very limited information regarding outcomes for siblings and extended family members after a child's PICU stay. Conclusions Significant opportunities remain for research exploring family functioning after PICU discharge. We recommend that future work include more diverse populations with respect to the critically ill child as well as family characteristics, include more intervention studies, and enrich existing knowledge about outcomes for siblings and extended family.

Promoting Readiness of Minors in Supplemental Security Income (PROMISE): Early Impacts from a Multi-Site Random Assignment Evaluation

Background PROMISE was a federal initiative to support youth receiving Supplemental Security Income (SSI) during the transition to adulthood. Objectives This article presents estimates of the impacts of the six PROMISE projects on youth and family outcomes as of 18 months after enrolling in PROMISE. Research Design The study uses a randomized controlled trial design. Subjects The six PROMISE projects each enrolled a minimum of 2000 treatment and control youth (and their parents) residing in their service areas who were aged 14 to 16 and receiving SSI. Measures We estimated impacts on outcomes related to youth and family service use, school enrollment, training, employment, earnings, and federal disability program participation using survey and administrative data. Results The projects succeeded in connecting more youth to transition services and more families to support services during the 18 months after enrollment, and most increased the likelihood that youth applied for state vocational rehabilitation services. On average, there was no impact on youth’s school enrollment, but there were favorable impacts on youth’s receipt of job-related training, employment, earnings, and total income. The projects did not affect parents’ employment, earnings, or income, on average. For most outcomes PROMISE affected, the impacts varied substantially across the projects. Conclusions The positive short-term impacts of PROMISE on youth’s use of transition services, youth employment, and families’ use of services are consistent with the program logic model and suggest there might be potential for longer-term favorable impacts on youth and family outcomes.

MacKillop Family Services’ Family Preservation and Reunification Response for Vulnerable Families—Protocol for an Effectiveness-Implementation Study

International evidence supports the effect of intensive family preservation and reunification services in preventing children’s placement in out-of-home care (OOHC). Evidence within Australia is scarce. This protocol paper describes a hybrid effectiveness-implementation evaluation of the Victorian Family Preservation and Reunification (FPR) Response implemented by MacKillop Family Services. Participants include families engaged in the program and staff involved in program delivery. A pre-post study design will be used to assess the effectiveness of the FPR in improving family outcomes from intake to closure, including: (i) parenting knowledge, skills, and capability; (ii) family safety and home environment; (iii) child development, adolescent behaviour, education attendance and attachment; (iv) connection to services; and (v) prevention of children from entering or re-entering OOHC. Interviews and focus groups will be conducted with staff to evaluate the program’s fidelity, reach, feasibility, acceptability, and enablers and barriers to implementation. Quantitative data will be analysed using descriptive statistics and a series of paired-samples t-tests and F tests to examine changes in outcomes over time; thematic analysis will be used for qualitative data. If the FPR can yield significant improvements in families’ outcomes, this would provide strong support for its scale-up across Australia, to better support vulnerable families.